Well, my summation of the visit to the Chronic Fatigue Clinic changed in tone a little when I received the paperwork and called to make a follow-up appointment. The next available opportunity to see the main clinic doctor is not until the end of April. After he asked me no questions and spent only about 20 minutes with us, I can’t ask my questions and get some advice on how to live for another 3 1/2 months? That’s almost a year from when I first picked up the phone to call them. What if I didn’t have an amazing GP and she hadn’t referred me to the Good Doctor? Would I just be floundering on my own all this time? I’m disgusted. The system is broken. There are no options for us. I guess I would have gone to specialty clinics and alternative medicine practitioners that don’t take insurance… So, I’d be in an even worse financial situation.
You can see below why I was annoyed (murderous) when I got the paperwork in the mail today. Only one of the boxes has a check mark because they didn’t do any blood tests and they didn’t touch me. They checked “‘tender points’ on your muscles” because I told them my muscles are sore. I haven’t had a blood test done in a year. They never said anything like, “There are these tests that we can do, but it’ll have to be the next appointment” or anything that might reassure me that they’re not either lazy or skeptical or both. Or the system just does not work.
And the referral to see their therapist says, “Patient with fatigue. Please evaluate for CBT. Also depression and anxiety.” My bubble is burst. It’s just like all the ME/CFS patients online said it would be. Graded exercise and CBT for depression and anxiety. I’m depressed my life is gone and I’m anxious that I might never have a good quality of life, but I’m not depressed and anxious clinically. So, why should I go back to see him? Is he at home in the evenings pouring over the medical literature and the studies like I am? Is he reading one after another personal story on blogs and in forums? I know more than they do and, more importantly, I know my body more than they do. I’m on my own in this.
PS: Our appointment was January 3rd, 2013. Idiot.
I can see too many mouths open
Too many eyes closed, ears closed
Not enough minds open
Ugh. How incredibly annoying. When you get better, you absolutely need to be an advocate for this or a practitioner in it.
I’m so sorry.
AWFUL!!! and this is supposed to be a special clinic specifically for CFS and Fibro!?!?!? And they suck just as bad!